Welcome to the life of Eleanor Guilford! She is a sassy, cute three year old who loves to run, read, and ramble on about anything...did we mention she just happens to have CF? Follow our struggles, triumphs and everyday lulls...

Thursday, March 15, 2012

Eleanor update

We are offically on Cipro!  Yea and boo!  So happy we can get it in her body and get the Staph infection out.  Boo that her tummy has already started hurting.  We are doing probiotics to help her but just pray that they work for her throughout this 21 day regimen we are on.

Eleanor didn't take a nap today or yesterday and it seems to have caught up with her.  I am pretty sure that those of you who know me know that I really like her to take a nap when she is not having trouble with anything.  She just acts better because she is more rested.  I KNOW, I know she is four but her body is different than most four year olds.  Now that she is fighting this infection in her lungs she seems to be more tired.  Ever since she started the Cipro her cough seems to have gotten worse and she just seems to be a little out of sorts.  All of that to say that two days of no napping means a tired, ill little girl. 

Since she didn't take her nap today I announced that she would go to bed early.  As any of you CF Mama's know out there that can be quite an undertaking!  She normally goes to bed around 9 - 930.  Tonight she was in bed at 815.   I was quite sure we would have some moments where she would come out of her room with the normal excuses as to why she could not go to sleep.  However, she went straight to sleep.  Not ONE peep from her!  This tells me how tired she was.  She rarely does this and tells me just how much of a toll her CF is taking on her right now.

Please pray for her body to rest and repair itself while she is asleep and that she will take her naps so she can feel normal.  I pray that she wakes up tomorrow morning and this good nights rest helps her to feel rested and great in the morning.

Much Love,

Tuesday, March 13, 2012

Culture update...

I called this morning and Eleanor cultured Staph. Ugh! This is the first time she has cultured it.  The nurse knowing my tendancy to freak out told me to not worry! :)  I know, right!  She is right thought it does me no good to worry.  The cipro the doctor prescribed for Eleanor will take care of the Staph in her lungs so we are good!  I pray this helps her lungs to feel better.  Keep praying for her...she had a really good day as far as attitude and eating today.  I could feel the prayers!  I cannot tell you how much it means to me to know we are constantly wrapped in prayer.  It makes me smile! 

Eleanor ate such a good lunch today at Simple Simon's Pizza in Dothan.  I was ready to go and she said, "Wait mommy!  I want another piece of pizza!"  Boy was that music to my ears! 

We should start the Cipro tomorrow.  Please pray it kills all the bad stuff and doesn't cause any tummy troubles.


Thursday, March 8, 2012

Eleanor's latest CF Visit

We just got back from our day long journey to Pensacola to see the CF doctor.  It is always an adventure when we go to Pensacola.  Especially now that we have Thomas, who is now five months, to go along for a whole day confined to either a car seat or a stroller.  Today Grami and Pawpaw went with us and helped make the trip so much better!
Some background: Eleanor has had a on and off stuffy nose and just in the last week a crappy sounding cough.  She also has started having a hard time dealing with certain things...mostly because lack of sleep and today we found out another reason.

So the great news is that we gained 1.3 pounds since December.  I think that I can speak for Robert and I both when I say, "YEAH!!!!" We have worked extra hard to get some weight on her.  She knows the routine when we check in and she gets her vitals done.  The Respiratory tech tried to get her to blow in the macine that will measure her PFTs but she said she was scared.  I knew something was off when she said that.  So one of my prayer request is to pray that at our next visit she steps up and blows in the machine.  I know she can do it!  Last time she did very good with getting her culture and this time she freaked out a little bit but we did get it done.

She then saw the doctor and we talked about several things.  One thing being that the flu is going around Hartford so I asked about going to church.  You see we do not live in a bubble with Eleanor but we also try to make sure to keep her out of "for sure" bad situations.  I hope that makes sense.  She has her flu shot but since the flu is prevelant the doctor said we might take a break for a week or two from church to let it run its course.  I hate this because she loves going, but I know it is best for her right now.

Another thing we talked about was Eleanor's cough.  It is a yucky cough and after listening to her the doctor said she heard the dreaded crackling in the lungs.  So we are on an extra one or two vest treatments with her xopenex.  Doc went ahead and prescribed Cipro for 21 days. We hope this clears the crud out!!  So pray she can maintain a good attitude with all of the extra stuff.  She has done good since her other new treatments we added last time, but lately she has been a bit off in her attitude.  Pray that this medicine helps clear her lungs and helps get her back to the peppy Eleanor we know.

We go back April 19th as a follow up appointment to see how she is doing.  We appreciate all of our prayer warriors.

We get our culture back on Monday...will try to update that next week.